Advocating for Caregiving From the Roots Up John Schall Chief Executive Officer Caregiver Action Network March 13, 2013

Who We Are CAN’s Mission… …is to promote resourcefulness and respect for the more than 65 million family caregivers across the country.

What We Do CAN Connects Caregivers with Valuable Resources Advice from Caregiver Voices Peer Support Caregiving Information Advocacy for Caregivers

CAN’s Goals Create Resourceful Caregivers Serve an increasing number of family caregivers with practical help, support and information. Reduce Caregiver Stress Improve the quality of life for family caregivers by reducing their day-to-day stress and financial distress. Create Respect for Family Caregivers Advance the case for family caregiver recognition and support. Create Capable Caregivers Build family caregiver confidence and capability through the dissemination of educational programs that demonstrate a positive impact on the lives of family caregivers.

CAN’s New Interactive Website Organized by Four Profiles: I just realized I’m a family caregiver now. I have been a family caregiver for years. I live far away and I’m on the caregiving team. I have a job and I’m the caregiver for my loved one.

Let’s Take a Look at the States Which states do well? – AARP’s “State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers” Any discernible trends? What to watch for?

Source: AARP State Long-Term Services and Supports Scorecard, 2011

Examples of Current State Efforts Rhode Island: caregiver assessment Vermont: Support and Services at Home model programs New Jersey: tax credits Source: Family Caregiver Alliance Policy Digest Feb. 19, 2013

State Trends In the last few years Family and medical leave Tax incentives Respite care Medicaid benefits Now Tax incentives Medicaid benefits Care coordination 529 Programs Respite care

State Trends Summary A lot gets introduced, not a lot gets passed Not much of a pattern across states New: Family caregiver discrimination laws in 63 localities in 22 states Watch for: possible new 529 programs (akin to college savings programs)

Advocacy Tips It’s about relationships, not just contacts Use personal stories Hit them several times during the year Use National Family Caregivers Month – State and local proclamations Use the State Scorecard – whether good or bad

Access to Grass Roots CAN’s Story Project database searchable by state, disease condition, relationship, etc. Alzheimer’s videos USA Today caregiving section this Friday National TV Public Service Announcement CAN’s Online Forum

How to Connect with CAN